Veptr moms - have any of you had this experience? When we take Giana off of the ventilator she is completely fine until she realizes that she's not connected or hears an alarm, etc. Have your kids (that have come off the vent) had this emotional sort of attachment to the ventilator? Any thoughts on overcoming it?

Andrew has been on and off ventilators and never had a problem but he does get nervous when he is in the hospital on oxygen and they have to take it off for a few minutes. I think he thinks he'll pass out or something - even though he's old enough to understand that won't happen. I think its more of a comfort thing - especially in the hospital where you aren't quite sure what willl happen next. Maybe its something like that? What does Giana do when she realizes it - can you distract her with other things she likes? Sorry I'm not more help.

Our neonatologist told us that it would be a hard process if Kenzie ever became completely vent free. She said that since that is all Kenzie will ever know for a while that it to her will be like another "Limb" that she will feel lost and out of control without it. When we started weaning we started in 10-15 min. sprints and would take her all over the house and outside if weather permitted. Then we moved her up to 30 min. and then an hour and so on. She is now when well able to be off for 11-12 hrs. at a time. She does use it anytime she is asleep and she even still asks for it at times because it comforts her. We had to do lots of distractions in the beginning but once she was able to crawl and then walk she wanted off even more so. Liked the freedom of trying to keep up with big brother and big sister. Hang in there Dana, one day she will just blow you away because she will take it off on her own and you will have to fight her to put it back on for the Re-boost as our pulmo calls it.